A very good friend raised an interesting point in conversation today, and so that's what prompted this post. She said "If I didn't know how tired you get, and all the things you can't do because of your MS, your blog would make me think that you are really well". I haven't blogged about the time it takes me to get going in the morning, or how much rest I have to have because I thought it would be boring. My friend countered that argument with "Other people out there with MS need to know you aren't superwoman!" So here is a guide to my typical day.
I don't make any appointments before 11.00 am, unless I have no choice in the matter. Getting from waking up to being dressed takes a minimum of 2 hours, and at least 2 cups of caffeinated coffee to lift the weariness from my brain. And that's only on the days when I can actually function. There are days when I live in my PJs, and only leave my bed to use the loo. My iPad is my boon companion. I can sit up in bed and write this blog, browse Pinterest and Facebook, and watch TV on it. On my very worst days I just sleep for hours at a time. As Thursday is my day at college I keep Wednesday and Friday free to rest. No rest = no college. There are days when resting makes no difference. I can spend a whole day resting and still have no energy the next day.
MS affects everyone differently. Most of us have fatigue and memory loss. I can also trip over invisible objects, choke on my own saliva, and throw a cup of tea over myself. The tremor in my hands comes and goes; the finger and thumb pincer grip is one of the worst to control because my thumb shakes. Sometimes my hand jerks, and whatever I'm holding gets chucked across the room. I've fallen down the stairs when my feet just went from under me - so now I use a stair lift. Sometimes my left side goes numb, all the way down to the tips of my toes, and I can't feel the floor under my foot. I've got permanent loss of sensation in my right hand from a particularly nasty relapse that caused loss of balance and numbness in my right hand, arm, and the side of my face.
I lost my job because after 6 months they couldn't keep waiting for me to recover. And even now, nearly 18 months later, I couldn't do that job.
So what can I do? Well, I can take each day as it comes, make the most of the energy I do have, and pace my activities to try and stay as well as possible. I could wake up tomorrow and not be able to get out of bed with fatigue; or not be able to see out of my left eye due to optic neuritis; or my feet and legs could be numb; or my balance might have gone haywire .... No one knows what's round the corner, and if you have MS, or one of the other chronic conditions such as MS and Fibromyalgia, this is particularly true. I just tell myself "This too shall pass", which is my personal mantra, and make the most of the good days. Creativity keeps me sane; rest keeps me (mostly) functioning.